Dan,
Reading your experience with your battery charger can almost send me into a panic attack. I’m glad it all worked out for you, but I can’t help but wonder what I would have done. Panic attack probably. It seems odd that I would react this way because I have legs that work so what’s the big deal. I’m not the one going to be stuck in a chair that won’t go. I guess the problem is that I am the one that is required to solve every problem that arises. Maybe it is what you have said. I feel utterly alone in trying to solve everything there is about my husband’s SCI.
I am beginning to wonder if we have a sort of drug addict/enabler relationship. My husband is not required to deal with anything. If a charger blows, it is my job to figure out a solution. He sits back and says…”Trish, what are you going to do?” It has been this way since day 1 of the accident which will be 7 years on July 14th. I made all the rehab decisions because he was unable. I handled all the legal issues. I hired a contractor and had our house remodeled. I hired caregivers. I was/am his primary caregiver. I found his doctors, his DME suppliers, got his supplies, his prescriptions and everything else that was required. At some point I wanted him to reclaim his life in this respect, but that has never fully happened and maybe I don’t really allow it. If he doesn’t do something that is required, I immediately swoop in and make it happen because I worry something serious will result if I don’t.
Just like today; he was going to a new doctor. He screwed around all day yesterday playing on the computer, reading, watching movies while I worked at my “away job” and then came home and did my at home job plus put a coat of paint on the walls of my son’s room. After I get him to bed, he has the nerve to ask me to type up a medication list for him and a summary of his hematology issues over the past 7 years for this new doctor. OK, it’s his body, his SCI, but he thinks I am better able and more knowledgeable to put this information together.
Well, I was a little pissed, a little tired, but I did it because I wanted the doctor to have the correct information. I do this stuff constantly. Am I his enabler? Does he not take more responsibility because I have done this for the last 7 years? I want to stop. I want him to take care of the things he can, but he never does so there I am doing it.
Talk about feeling alone. I feel like I am the only one worrying about all of this stuff. Even he doesn’t because he has let it go and turned it over to me without another thought.
When we were kids growing up, I saw how my mom made my dad so helpless. To this day he can’t (or won’t) even make a sandwich for himself because he is so used to my mom doing everything for him. He is a capable, smart, driven man and worked so hard and provided so well for our family. He owned and ran a large manufacturing company until he was nearly 70, but he can’t use a microwave, a washer, a stove, a dishwasher, or a trash can for that matter. I bet he has only been in a grocery store maybe 5 times in his adult life. Except for the fact that he can walk and use his arms, he is nearly as paralyzed as my husband.
I think I might be turning into my mom. Maybe I have made my husband this dependant, but how do you change things now?
Trish,
this is such an important issue in every caregiving relationship. My wife cared for me in a very similar way during the early years after my accident. Eventually, the responsibility for my care shifted and she became my helper rather than my manager. Trish, you know the answer or else you wouldn't have concluded your letter the way you did. But before I answer your question about what can be done, I want you to answer mine. Are you willing to change? Please don't read anymore until you think about that question for a few minutes.
If you are able to answer that question with clarity and integrity, you will probably feel better. Because if you are not willing to change, or too scared to change, then this is the relationship you've constructed and you were choosing to maintain it as is. That's a more powerful position than feeling like a victim of his spinal cord injury, your mother's genetics or your own neurosis.
But if you are willing to change, then you have to confront many of your greatest fears. Clearly one of the fears is whether your husband is capable of caring for himself and if you gave up some control, could he survive? One fear you might share with your mother is that if you were no longer the one who does everything for everyone, who would you be and we do you lose your sense of self?
In the Hebrew Bible God says to Abraham "leave your father's house". And so the journey begins. But a Rabbi told me that in the Hebrew, the words mean literally "leave what is familiar". That is how all growth happens. We must release our grasp on what is familiar, move into the unknown with fear and faith and trust that things will work out the way they should.
Here is the answer to your question. Yes, I am willing to change. I never intended or wanted my self worth to be linked to some vigilantly-like management of my husband’s SCI. In the beginning this role just happened out of necessity. Our relationship before SCI wasn’t like this at all.
From the moment of the accident, I flew into survival mode. He was taken to one hospital. I and the kids to another. His condition was devastating, and my only thought was to get myself and the kids out of our hospital and get over to help him. He was unresponsive for a few weeks and then for several months after that was just totally out of it. He was unable to speak for the first 9 months after the accident and barely understood enough to make a decision. Every decision was up to me, so I took over. I felt like his very survival was up to me. My first husband had died of colon cancer when I was only 27 and he 35. Now some 10+ years later it felt like it was happening all over again. I just didn’t want to screw it up this time.
You are correct, what keeps me in this role is fear. I am terrified that something more awful than what has already happened will happen to him. I somehow have convinced myself that my ability to micro-manage the situation is directly related to his survival of the situation. In the process, I think I have convinced him of the same. I would have so talked him out of traveling to Israel or Taiwan. It all seems too dangerous and risky for both of us. Heck one day I seriously thought about talking him out of going over to my sister’s house, and she only lives a half mile away. He was going to go in the afternoon with his nurse to watch a move with the BIL while I was at work. We have been over there plenty of times, but I have always been there. The maneuver into their house is a little tricky, and he has nearly gone off the ramp a couple of times only to be saved by me guiding his chair from behind. I kept my mouth shut, but all afternoon I could imagine him driving his wheelchair off the ramp because nobody was there to do what I usually do. Well you can guess that he managed fine without me. The fear is there, but maybe there is hope that I can slowly let go. Unless you have been in this type of caregiving situation, I think it is hard to imagine the responsibilities and expectations a caregiver places upon themselves.
I have decided that I want to try to change this dynamic. My first step was speaking to him and letting him know that I didn’t want to micro-manage his life. Of course I am willing to help, but I don’t want to be the boss. He admitted that he is scarred about his capability but wanted to try too. We agreed that he would step up, and I would step back. He is going to commit to handling more things and ask for specific help when he runs into an issue. I am going to commit to butting out and just helping when asked.
I hope this is a first step to a more balanced approach to the responsibility of his care. It isn’t easy to change. In these first 7 years we have done many things wrong and maybe a few things right. Hopefully this will be a first step. However, I don’t think I am going to be cured by next Tuesday. It seems like it could take a bit more time to leave what is familiar, but I’ll let you know.
RBF:
Thanks for your comments. I thought your insight about caregivers was very interesting. Over the years I have noticed a couple of types of caregivers. Some are able and willing to be directed, but others don’t like it at all. I have seen that the later group seems to like to care for babies, kids, and individuals that can’t communicate. Whenever we get someone new and I find they generally just do babies or kids, I’m always wondering if they will be able to handle it here. Usually I’m right, and they don’t stay too long. I guess everyone has their own comfort zone. Luckily there are people of all sorts that need homecare.
We have had a few pluses this week and a few minuses in our changing of the guard. On the minus side, my husband let himself run out of respiratory water. He also forgot to let me know when he wanted a trach change. On Thursday, he told me it was time, and he would ask me this weekend. I said fine and then he forgot. Tonight I went ahead and reminded him and then changed his trach which is when I found out we were out of respiratory water. That one is up to him. Hopefully he will take care of it tomorrow because I’m stepping out of the water issue.
On the plus side, he signed up our 15 year old son for Driver’s Ed. He even went to the driving school, paid the fees and picked up the certificate we needed to get the learner’s permit at the BMV. He also stepped up and took our son to this summer weight training and conditioning program at the high school. Usually this stuff is all up to me, but he and his nurse took care of it. Just those couple of things made me very happy. For once I feel like maybe I’m not the only parent in this house.
Change is hard and a little scary, but I think in the long run not changing will be harder on both of us.
Trish - we continue to live oddly parallel lives. I haven't been over in a very long time, but in looking around today, this post really hit home with me because I'm dealing with the same issues. I made two very major changes lately, and both have been absolutely amazingly good for me.
1) we hired a PCA. We can afford it, but just barely. But I can only barely hold onto life if we don't, so that is that. My husband is not terribly thrilled with how fast we are blowing through some money we had saved, but you know - tough! It's just the price of doing business. I can't do it all. And since we do have a little fall back now financially (which wasn't the case a few months ago), then I'm going to take advantage of it.
2) HE is in charge of a bunch more things now:
When we first got the PCA, I would arrange what time he came over and then every. single. day. my husband would complain that he was too tired, could the PCA come later, or to just send him home, etc etc. I just said NO. He is here now, you are getting ranged, getting a shower, getting fed and getting up. The end. But they he was pissed at me for him not wanting the PCA to work then. It finally occured to me a few days ago that MY HUSBAND is the one who should be telling the PCA when HE wants him to come. So last week I made him negotiate a schedule with the PCA and a few times he asked for my opinion about when he should come, and I said "that's between you and (PCA) - I want nothing to do with it so that you can't be mad at me!". And damn, it worked. Or at least so far, a few days is probably too soon to declare victory.
Now with the PCA, things aren't always done right - he's new, he's young and well, he's not me. The other day the PCA didn't put the leg strap on him when he was up in his chair, which I discovered when I put him to bed that night. I was irked because its very important obviously so that his suprapub cath doesn't pull on his bladder (which it was), but my husband seemed irked at ME for not checking it after he was up. The next day I realized: this is not my problem!!!! He has a perfectly good set of eyes, HE can check if his leg strap is on as he is getting in his chair. I do not have to check every single little thing. HE can do it.
I have a little self righteous indignation going now, so it may come off rather rude above, but its more about my liberation than trying to be mean to my husband. And liberation feels good! I'm now thinking about the other things he can do so that I can be more free of the chains of caregiving and be more of a normal wife again.
